Dear Ms Mutch

Re: Regulation 28 Report to Prevent Future Deaths – John Edward Kay 26/11/21

Thank you for your Regulation 28 Report dated 04/08/22 concerning the sad death of John Edward Kay on 26/11/21. On behalf of NHS Greater Manchester Integrated Care (NHS GM), I would like to begin by offering our sincere condolences to Mr. Kays family for their loss.

Thank you for highlighting your concerns during Mr. Kays Inquest which concluded on 24 June
2022. On behalf of NHS GM, I apologise that you have had to bring these matters of concern to our attention, but it is also very important to ensure we make the necessary improvements to the quality and safety of future services.

The inquest concluded that John’s death was as a consequence of the recognised complications of previous necessary surgery. The medical cause of death was 1a) Recurrent Aspiration Pneumonia; 1b) Leaking Trachea-Oesophageal Fistula; 1c) Oesophageal Stricture related to treatment (surgery and radiotherapy) for Laryngeal Carcinoma; II) Chronic Obstructive Pulmonary Disease. Following the inquest, you raised concerns in your Regulation 28 Report to NHS GM that there is a risk future deaths will occur unless action is taken.

I hope the response below demonstrates to you and Mr. Kay’s family that NHS GM has taken the concerns you have raised seriously and will learn from this as a whole system.

This letter addresses the issues that fall within the remit of NHSGM and how we can share the learning from this case.

The inquest found that management of the valve was complex and that information about the management of Mr Kay’s valve was not passed on to the Care Home when he was discharged from hospital. As a result, Mr Kay was not seen or referred for any replacements; this meant that he was at increased risk of developing aspiration pneumonia

When patients are in the planning process for laryngectomy, they are given an information booklet produced by Macmillan – ‘Understanding cancer of the larynx’. Patients are also directed to additional information produced by the National Association of Laryngectomee Clubs (NALC).

4th Floor, Piccadilly Place, Manchester M1 3BN Tel: 0161 6257791 www.gmintegratedcare.org.uk

Prior to a patient’s discharge, the Head and Neck Clinical Nurse Specialist will discuss all aspects of laryngectomy care including humidification, skin care and emergency protocol. The service has developed a laryngectomy advice sheet which is also provided to patients.

The Speech and Language Therapy (SaLT) Team show patients and their relative/carer how to manage valve leakages and also show them how to insert the plug to allow patients to eat and drink safely, until this can be changed in one of our clinics. The patient is deemed to be safe for discharge once the staff are content the patient can manage their laryngectomy and speaking valve care. This is usually a multidisciplinary team decision involving the nursing staff, Head and neck cancer nurse specialist and speech and language therapist as well as medical staff.

As Stepping Hill Hospital has a more limited valve service than is available at Wythenshawe Hospital, patients often come to Wythenshawe to have these replaced. The patient should carry a valve record book which is filled in at each valve change and includes information on the size and brand used.

Mr Kay was admitted to Wythenshawe Hospital for a tight oesophagus on 16th September 2019 and had a balloon dilatation. His valve was found to be leaking afterwards and was changed. He was discharged with an improved swallow and functioning valve on the 18th September 2019. This was the last interaction of Mr Kay with the service at Wythenshawe Hospital, MFT.

At the time of Mr Kay’s admission there were no concerns relating to his mental capacity and he was fully aware of his valve and the required management and how to access support.

At the time of Mr Kay’s last admission to the service at Wythenshawe Hospital in 2019, he was living at independently and was not resident within a Care Home. The Head and Neck team were unaware that Mr Kay had moved into Care Home and therefore, would not have been able to provide any information or advice relating to his ongoing valve management.

Speaking valves are not that common in care home placements but as with any need, the accepting care home uses information provided in a discharge to assess or trusted assessor document or they carry out their own assessment to determine whether or not they can meet the needs of the individual patient. There are a number of potential outcomes following such an assessment: -

(a) The care home determine that they can meet the needs of the patient; in this case the expectation would be that the appropriate training is in place and the patient discharge can proceed.

4th Floor, Piccadilly Place, Manchester M1 3BN Tel: 0161 6257791 www.gmintegratedcare.org.uk (b) The care home determine that they can meet the need once appropriate training is in completed; in this case the discharge would be delayed until such time as the patient could safely be transferred to the home on completion of all training. (c) The home determines that they cannot meet the needs of the patient.

The role of the specialist nurse was not understood within the community, including the GP. Greater understanding of the role would have been helpful.

Clinical Nurse Specialists (CNSs) roles developed steadily in the UK as a response to the publication of The Scope of Professional Practice by the UK Central Council for Nursing, Midwifery and Health Visiting (UKCC) (1992) and the subsequent NHS Plan (Department of Health (DH), 2000a).

CNSs provide patients their contact details at diagnosis and are available to support throughout their treatment journey and beyond. Patients are given the contact details of their CNS at their diagnosing hospital.

CNS support was provided by Wythenshawe Hospital. Specialist speech and language therapy was also provided by Wythenshawe Hospital. Mr Kay had a review appointment at Christie Hospital with Wythenshawe ENT team on 19/01/2021, he was discharged from their care and advised to contact the CNS from Wythenshawe if he had any concerns. During Mr Kay’s Stepping Hill admissions, the ENT team were informed by both Mr Kay and his NOK that they did hold the contact details for the Wythenshawe CNS should they have been required.

Stockport Locality’s Clinical Lead reviewed this case and was satisfied that Mr Kay was well educated in relation to the management of his valve and that his NOK was also knowledgeable about how and when to seek assistance. They were further satisfied that as Mr Kay had capacity to make decisions for himself, the team acted correctly in accepting his decision to decline other strategies to prevent a leak resulting in aspiration.

However, this case has highlighted a potential gap in knowledge in relation to GPs and it has been arranged for a briefing paper to be shared across the Stockport GP population setting down information about the management of these valves and the availability of the specialist nurse.

We are mindful that steps taken now cannot undo the events as they happened in this case but are confident that the appropriate information has been shared within Stockport to enable our GP community to appropriately support patients and their families in accessing care and specialist input as and when it is required.

4th Floor, Piccadilly Place, Manchester M1 3BN Tel: 0161 6257791 www.gmintegratedcare.org.uk Actions taken or being taken to share learning across Greater Manchester.

1. Learning to be presented/shared with the Greater Manchester System Quality Group. This meeting is attended by commissioners, including commissioners of specialist services, regulators, Healthwatch and NICE.

2. Shared learning from this and similar cases at Greater Manchester and borough level will be cascaded to professionals through relevant governance and learning forums.

In conclusion, key learning points and recommendations will be monitored to ensure they are embedded within practice. NHS GM is committed to improving outcomes for the population of Greater Manchester.

I hope this response demonstrates to you and Mr. Kays family that NHS GM has taken the concerns you have raised seriously and is committed to work together as a system including our service users, carers and families to improve the care provided.

Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.